Sunday, July 28, 2013

When someone you know has experienced something earth shattering, something that has completely changed their life so that they will never be the person they were before, it is often hard for friends and family to know what to say to support them.

We all have difficult moments in our lives but many people will never have to go through something as devastating as being told your child has a permanent disability, a life threatening illness or actually losing a child. These things change you. They change your perspective on yourself, the world and everything in it. They force you to walk a path you never imagined could have existed, least of all for you and your family.

Every single person I know that has experienced something like this has also talked about how they lost friends or relationships in the process. People in their lives either weren't supportive, couldn't deal with the situation themselves or were outright rude and mean.

For some reason these thoughts have stayed with me recently. I have read many other articles and blog posts about how people deal with the comments they hear. How the cliches don't help and the platitudes don't either. How we all need to try to actually be there for one another instead of just offering "comfort" in the form of a hollow comment.

Tonight I read a post that a friend shared on Facebook that addresses this issue perfectly for me. You should read it too, here's the link:

I am not trying to chastise anyone for things they may have said to people in the past. We are ALL guilty of saying these things. When we haven't yet experienced one of these earth shattering events, the cliches sound good. They sound helpful and most of us actually say them with good intentions. But so often they don't help. They minimize the enormity of the pain that we are feeling and make it seem like you think if you say this then all of that will go away and you won't have to feel uncomfortable anymore.

But it's not about you.

It's not about how uncomfortable you feel.

It's about being supportive and doing what you can to let your friend/neighbor/family member know that you are there for them.

The cliches and platitudes won't make the pain go away. No matter how nice they sound. Nothing will. That's right, nothing.

Having a child that has been diagnosed with (multiple) disabilities is hard. When he was born and diagnosed with Down syndrome, I had a new baby that I was completely in love with and had just been told that there was something "wrong" with him that could never be made "right".

No amount of "It will be alright", "God only gives us what we can handle", "God only gives special children to special people" or "You'll be fine, you are so strong" was going to make that better.

When people said those things to me, I heard:

"I couldn't deal with that, so you must be different from me somehow. Maybe if I say these things then she will feel better and I won't have to hear about it anymore"

Even though I KNOW that is not what people meant, it's what it felt like.

The whole point of me writing all of this is not to make anyone feel bad about what they may have said in the past. It's just to get people to try to think a little more before they speak. Offer compassion and real support, not just empty words.

The best thing you can say (in my opinion) to someone that is going through something you really don't understand is "I'm here for you". And mean it. Don't wait for them to ask for your help, just offer or do what you can. Send a text, make a phone call, send a note, bring dinner or just listen. Don't try to wave the pain away, just be the shoulder to cry on.

Say something from the heart, not just something that sounds good.

It's not about looking back and feeling guilty for everything you have done wrong, it's about going forward and being kind.

Friday, July 26, 2013

I just read a blog post that several friends have shared on Facebook about one mom's realization that she is in one of life's "sweet spots". An age where her kids are old enough to do many things independently but they are still young enough to share their lives and love with her. It was a very sweet post and many people commented about how well they could relate or how wonderful it was that she was able to realize it while it was happening.

I did not have that reaction. My life does not contain those "sweet spots" and it likely never will. Instead, I have been living with the three-year-long terrible twos that show no sign of slowing down. Don't get me wrong, I can understand this perspective to a degree. My older, typical son is almost 9. Definitely sweet spot age. He wants some independence but not too much. He is starting to become his own person but he still wants to share it all with me. He also talks non-stop, but that's another story.

My problem with the sweet spot is that it isn't reality for everyone. I hear all the time about how we "need to slow down and appreciate our kids and the moment that we're in because it all goes by so fast". Yeah, yeah, yeah. I know all of this. But sometimes - many times - the moment that we're in sucks. We can look back on it and remember the good things. Somehow the stress or struggles seem to fade but the good memories remain. But when you are in the midst of the insanity, it's difficult to stop and appreciate it. And I'm sick of being made to feel guilty when I can't do that.

I was talking to a friend last night who also happens to have three (!) kids with special needs. We talked about many things that we have in common, many emotions and situations that we have experienced that parents of typical children will never understand. One thing that we discussed that struck me was the emotional toll that CONSTANTLY worrying about your child and his safety will take on you. Try to remember the feeling of following your 1 year old around on the playground when she is just learning to navigate it. You follow right behind her to make sure she doesn't get hurt or fall. Now try to imagine carrying that feeling with you ALL. THE. TIME. It's not just that back of the mind, "oh, I hope she stays safe" feeling. If that isn't something you can relate to, it's pretty much feeling like you are under the "fight or flight" scenario at all times. You can't relax because you have to be constantly on guard to make sure your child is safe and isn't damaging anything or anyone. My friend's son is 15 now and she still feels that way. It is utterly exhausting. I can't emphasize that enough.

UTTERLY. EXHAUSTING.

We don't get to sit by the pool drinking coffee and watch our kids play with their friends. At almost five, I still have to follow right behind my son to be sure he doesn't dart away and get hurt. Because he will without a second thought. He has no safety awareness at all. It may be something that will come with time and teaching or it may not. He likely will never hit that sweet spot age.

So there it is. My not-so-sweet spot.

At this point, I think if you can enjoy the moment, great. Go for it. And if you can't, give yourself a break. You will look back on it and the tough parts will fade and the good memories will remain.

And if you have read that post, loved it or shared, that's great too! I don't mean to discount that mom's - or anyone else's - feelings about their lives and their children. I just wanted to share mine too.

And here's a cute picture of Aaron to make up for some of my not-so-sweet feelings. He's pretty cute, so that always helps. :-)

Wednesday, July 10, 2013

I have hesitated to write this post for a while because I don't want it to seem like my life is all doom and gloom all the time. I also don't want to offend the friends I have that have physically lost children. But the emotions are there and I feel like if sharing my experience may help someone else understand, then it's worth it. So here goes.

I am a grieving parent. Nearly five years ago, I experienced the most excruciatingly difficult moment of my life when I was told that my newborn son had Down syndrome - an irreversible, "untreatable" genetic condition that would affect nearly every system in his body, delay his development and mean he will need care for the rest of his life. He was diagnosed after he was born. The prenatal tests that we had did not catch it.

Aside from actually losing a child, I can't imagine an emotional pain greater than that which I felt that day. My son was still in my arms yet every part of me felt like I had lost him. Gone was the child I imagined would grow up wanting to be just like his big brother. When we found out we were having a second little boy, we were delighted that we would have two boys to play sports, watch Star Wars with their dad and dream of being superheroes. I had been through this parenting thing already. For almost four years I had been the mom to my sweet little boy that was so excited to have a little brother. We had playdates with friends, he went to preschool and he loved to read books and play on the playground. By the time his little brother was born he was at the point where I could sit and watch him play instead of needing to follow him around. But all of those dreams for his younger brother were ripped away from me when the blood tests came back and confirmed our fears.

The best way I can think of to describe what it felt like is this: It felt like the doctors came to me the day after my beautiful, perfect son was born and told me that he was gone. That he had not survived and they were very sorry. But here was a different baby for me to take home. One that would be completely different from the one I had given birth to and carried for nine months. One that would have different needs and whose life would take a direction that I never could have imagined.

Another way to describe it can be found in Emily Perl Kingsley's Welcome to Holland. Emily is also the mother of a child with Down syndrome. Her story is much more eloquent than mine and helped me through some difficult days. But it isn't our whole story either.

I didn't reject my son after his diagnosis, I loved him desperately and would have done anything to change the path that had just been forced in front of us. I cried over the thought of how children would treat him differently as he grew up. I cried about how much more difficult it would be for him to learn everything that comes naturally to most children. I cried for our older son and how his life would be impacted by his younger brother's diagnosis.

Don't get me wrong, there is a lot of positive information out there about how people with Down syndrome are thriving in society today. We read books and stories that encouraged us and gave us hope. And incidentally all of those things that I thought he wouldn't do, he does (loves to "play sports", play Star Wars and wants to be EXACTLY like his big brother). But that feeling of loss was still there. It IS still there. Every single day I feel it inside me. I lost something that day that will never come back. We'll never be that "typical" family that we thought we would be.

We will give our son every chance and opportunity that we can for him to have a happy and successful life, but it won't be the same life that his brother and peers have. For almost five years our lives have been filled with therapy visits, doctor's appointments, a seemingly-never-ending list of additional diagnoses, endless hours of research, meetings with various administrators and officials who want to talk about everything that is "wrong" with my son and the undeniable feeling that I live in a bubble, looking at a world go by that I'm no longer really a part of.

Watching families and friends enjoying outings, vacations and weekends can be hard. I haven't felt relaxed in five years and don't see any chance of that feeling returning anytime soon, if ever. Parenting a special needs child - at least this particular special needs child - is exhausting. Bone numbingly exhausting. Every. Single. Day.

Don't get me wrong. I adore my son. I love my family. I pray that life won't always be this stressful and exhausting.

But I won't stop grieving. I won't stop longing for what I lost that day. I have met some amazing people that are inside this bubble with me, but I'm not sure I will ever stop wishing I was on the other side. Out there where we always thought we would be.

About Me

Wife and mother to two little boys. Writer for About.com and a Pediatric Nurse. Busy doesn't even begin to describe my life. Having a son with special needs has changed everything about me and I'm learning more every day. Trying to find our way in a world that doesn't really understand what it is like to have a "disability". We're just loving our way through this life with our youngest son who has Down Syndrome, Celiac Disease and Asthma and his big brother who helps him every step of the way.